Just diagnosed

[anonymous]

Hello,
My Grandaughter was diagnosed as having CF last Friday. Actually she has had two sweat tests. The first one was 97 and the one taken Friday was 115. She is 16 months old. She has been sick since she was born. It has taken as the old saying goes "an act of Congress" to find out what has been wrong with her. Her Doctor kept diagnosing it as asthma. She has been so sick and the Dr. would not even prescribe breathing treatments. About three weeks ago she ended up in the hospital. A respiratory therapist who was helping take care of her came forward (without the Dr. or hospital knowing) and told us that she thought Madison ought to be checked for CF. It just so happened that she has a son who has it. We were stunned at the thought of it, but did insist to the Dr. that she be tested. Sure enough the test showed positive. We live in West Texas and thought that we had a pretty good Hospital in the area where we live, but soon found out that the Hospital staff/Dr., did not know much at all about CF. We decided to go to Ft. Worth. We took her to Cook Children's Hospital. We are so glad we did. We really liked her Dr. and got so much info. from the staff. So now we go forward.... I feel we have so much to learn about this. My daughter is six months pregnant with her second child. We now have to wait and see if this baby will have it too. My daughter and her husband are going for genetic counseling. I will be honest I am so scared, and feel so in the dark about what the future holds for my little grandbabies. I am fixing a big Christmas Goodie basket for the repiratory therapist, (our angel) who came forward. Thank goodness she did. Oh, and the Dr./Pediatrician who did nothing all those months is fired! We see a new one tomorrow, as well as continue to go to Ft. Worth to her CF Dr.

 

[anonymous]

HI im sorry to hear that you have to join our family, but there are alot of advances with cf and i know when my son was diagnosed it was a very tramatic experience but with proper care she will be fine.. if you would like to talk just let me know.. my email is Melissa1979@adelphia.net i also have instant messaging through aol, msn, and yahoo if youd like to chat.... take care

Melissa mom to dylan 6 no cf and caleb 3wcf

 

[anonymous]

Our thoughts and prayers will be with your family. At least she got diagnosed and you can now begin treating the CF. Honestly, you will notice a huge improvement in her health after a few weeks of treatment. It is amazing what some chest pt and medications can do. Everybody's Cf affects them differently, but with the technological advances and medical advances there are so many things that are keeping CFers healthy for so much longer. It is now common for people to live into their 40's, 50's and some even their 60's or more.
Congratulations to you for firing that doctor, I just can't understand why there is such a lack of knowledge in the medical field because they are finding Cf is more common than once believed and can sometiems go undiagnosed until adulthood if they have a minor case. Maybe if enough docs get the boot, they will figure they need to evaluate and research and test all of their patients questions and concerns. I take it your granddaughter lives in a state that does not require mandatory CF testing at birth. If I remember correctly, there are a few states who have signed new bills making it a mandatory test at birth just like a glucose test and so on that they do. You might want to consider signing your name on as a supporter for this cause in your state.
Best of luck with all of this and keep us updated!

Julie

 

[allie1]

I feel for you and your family b/c I can relate. My 3 yr old daughter was just diagnosed 6 months ago even though she showed the signs from day one. Also, she was diagnosed the day after my new daughter was born so I had the agony of learning about her diagnosis and then immediately worrying about the outcome of my new baby. I am praying that her new baby will be negative just like mine was. Things will get better as you learn more about the disease. I was devastated at first but in 6 months, we have learned to live with it and to make the most of every day. I'm praying for your family.

Amy

 

[MasonsMom]

I am sorry to hear about the problems you had with your pediatrician, but am curious as to where in West Texas you are located. I also live in West Texas and have a 2 month old son recently diagnosed with CF. We have been extremely pleased with his pediatrician and pulmonologist, and they are fairly close to home. If you want to talk to someone in the area, please feel free to e-mail me at velvet@wirelessfrontier.net.

 

[anonymous]

We have A LOT in common! However, it took 3 years to figure out what was going on with our son (obviously he was not as sick as your granddaughter - his problems were primarily digestive) and we immediately fired that doctor. I was ALSO 6 months pregnant when we found this out. I remember many nights lying on the floor of my son's room just crying (with my big belly) while he slept. We did not get any genetic counseling - I was just too scared to do any testing and not ready to face another CF diagnosis. We opted to have the cord blood tested to compare the baby's DNA to our son's mutations. That took about 2 weeks after our daughter was born - she is a CF carrier but does NOT have cf. Another thing we have in common - I take my son to the Pulmonology clinic at Cooks. We see Dr. Schultz. Please email me (our have your daughter or son-in-law email me) if you ever have any question. Or if there is something you want to talk about. Good luck!

Darla
p.s. My parents grew up in West Texas too - Cohoma (near Big Spring)

 

[anonymous]

Might help if I left you my email address:

brinklyr@msn.com


Please put something in the topic about "CF" or I will likely delete it with my junk mail.

Darla

 

[anonymous]

Hi, I just wanted to comment that I think it's great that you are here searching for info and support. My mother (who I love with all my heart) had such a long period of denial. She refused to believe the diagnosis until the DNA tests came back positive (six weeks later). It was a very difficult time for me because I needed her so, so much at a time when she just couldn't even confront the situation. I don't fault her for it, she couldn't believe her beautiful granddaughter could have such a serious disease. Also, her lack of knowledge about CF initially caused a lot of friction.

But, being the wonderful mother that she is, she is learning as much as possible about the disease. She has read "The Spirit of Lo" by the Dietrichs. It chronicles one family's personal journey with CF. She also read a medical manual published in Mexico (in Spanish) for families with CF. (Her native language is Spanish.) She often questions me now about different things, "But I read that . . ." She is even learning to do chest therapy. I remember the first time she saw me doing it, she said, "Oh I think all that pounding is hurting her more than helping." We have come a long way, and I couldn't do it without her. Your daughter is lucky to have you - Help her to be strong.
This is a great place for info and support.

Maria (mother of three daughters, the youngest, Samantha, w/cf)

 

[anonymous]

My thoughts and prayers are with you. I know how hard it can be when the diagnosis first happens. It's like the whole family gets CF. My suggestion is to become as educated as possible. I also think that even after the diagnosis you should treat her like any other normal kid. Our kids both have CF and it isn't any harder to have two kids with CF than it is to have one. So if they have another kid with CF it's not any harder.

 

[anonymous]

hello, my son was diagnosed with CF at 18 months. we took him to his first pediatric visit when he was 5 days old and he had lost over a pound--down from 6.6 to 5lbs. Nothing was done but supplementation--I was breastfeeding. he didn't weigh 10lbs til he was 6months. He wheezed and was given an inhaler as needed. he got pneumonia at 15months and then again at 18months----only then did they step up and test him. My mother-in-law knew this was going on and knew his symptoms, it was only after his diagnosis that she told us her sisters and nieces had CF-----when I initially told her she shrugged her shoulders and said "I thought that's what he had" Needless to say, I'm still bitter about that!! My son is doing great now, no pseudo, or pneumonia since diagnosis. He is in pre-K and has no serious issues at the moment. I live in Dallas and go the clinic at Children's Medical Center, it's still far from where you live but if you ever need someone to talk to email me sheli_janik@hotmail.com thanks

 

[anonymous]

I also carried my son for 7 months not knowing if he would have CF or not...it was terrible. But I firmly believed that this child was meant to be in this world CF or no CF so I continued the pregnancy without any pre-natal testing and prayed for the best. He was born healthy <img src="i/expressions/face-icon-small-smile.gif" border="0">

29yr old Mum ...2 boys ( 1w/cf + 1w/o cf)